"The hand that rocks the cradle, is the hand that rules the world."

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Yesterday, I visited my mom at her grave. And as I stood on the wet, soppy ground I talked with her. I told her how much I missed her and how each day is a struggle without her. As I looked at her grave marker the tears flowed uncontrollably and the wind started whipping around. I asked her how she was doing in heaven, if she was happy about the UCONN women winning, I updated her on my life since the last time I visited her. I told her how much I missed her and how I still can’t believe she is gone.

And as I stood there talking with her, again it became real. Sometimes I don’t realize she really is gone. I can’t touch her, hug her, kiss her or drink wine with her; but for some reason I don’t think she’s dead; I think she’s just at a rehab facility or Smilow Cancer Hospital.

When I arrive at her grave, it becomes real all over again. This is where I come to see her. This is the place I now come to visit. It’s where my mom lays. It’s where her body rests.

The other day I was writing thank you notes to everyone who sent their love and support during the most difficult time in our lives. I reached Father Dom’s (our priest) thank you note, and as I wrote I heard a knock. Our dogs started barking and ran to the door. To my surprise, no one was there. I went back to writing my thank you and just as I began, another knock. The dogs ran again to the door, then ran and looked out the window. Nothing. But then as I sat there and remembered that people have been telling me over and over to be open to the signs, I smiled and a couple tears filled my eyes. It was mom.

I’ve said it before, mom had this personality that was infectious, but her personality also had a very large piece of neurotic mom and wife. Constantly checking on dad and I and making sure she knew exactly what we were doing, when we were doing it, why we were doing it and if it was safe for us to be doing it. She kept tabs on us always. At 24, she would still tell me to text her when I got home, or tell me not to drive my car because it might be icy. So naturally, it makes sense for her to send signs frequently.

I bought an owl garden gnome in honor of the first sign we ever received from mom. I put it in our garden as protection and also to remind me of how lucky we are to have such an amazingly, beautiful angel looking down on us. Now, everyday when I come home, I see it and I take a minute to look at it, even sometimes saying “Hi, Mom.”

The other day, I came home from work, and instead of my usual glass of wine, I craved a Diet Coke. I’m not a usual soda drinker, but occasionally its DELICIOUS! So as I prepped dinner I sipped on my Diet Coke. After about 30 minutes of my chicken in the oven, I checked on it and when I went to grab for my Diet Coke, I realized – it was one of the cans that were part of the Coke name campaign – and it said MOM. I was frozen and held back my tears, washed the can and it is now sitting on our kitchen counter. Mom, you really are telling us your watching.

Each day is so hard and sometimes I wonder how in the world I will make it through. There are days I don’t want to talk, some days when all I want to do is lay in my bed and cry, some days when I want to scream, some days when I ask myself “Did I do something to deserve this?” But, what keeps me standing and what keeps me from curling up in my bed or crying all day is the fact mom would never want that for me; but even more so, for the first time in a LONG time, mom is healthy, mom is cancer free.

But that doesn’t mean it isn’t a struggle every day. That doesn’t mean that when I see people with their moms it’s not hard. That doesn’t mean that I am not dreading Mother’s Day and anytime I walk in the store and see Mother’s Day cards, decorations or gifts my eyes swell up with tears and I turn my head as fast as possible and turn my direction.

My mom is not here anymore. She will always be with me, but she’s not here physically. And that is something that hurts the most. It hurts that I can’t hug her. It hurts that I can’t touch her. It hurts that this has changed our family so much. It hurts not having her here. And I feel bad. I feel bad that she won’t be here for so many things. I feel bad that my dad has to go home and be alone. I feel bad that anytime someone says her name or talks about her I have to swallow hard to stop the tears from filling my eyes. I feel bad that it’s come to this.

Like this:

Visiting my mom isn’t going to a rehab facility or going to Smilow Cancer Hospital. It’s not going over her house. It’s not taking her to a doctor appointment.

Now, visiting her is at a grave.

It’s talking to the dirt and crying uncontrollably because I would give up anything to take her to just one more doctor appointment or visit her just one more time at Smilow Cancer Hospital. Even though it was exhausting, mentally and physically, I would give anything to just take care of her for a couple more days. I would do anything to have those moments back – to feed her, lift her drink up so she could take a sip, to help her change her clothes, to help her go to the bathroom, to talk with her and cry with her, to not sleep more than 3 hours a night.

People keep telling me you can still talk to her and she’s still here. But, I wish people would stop saying that because I know I can still talk to her – but it’s not the same. She doesn’t talk back. She doesn’t tell me when I’m being a bitch. She doesn’t tell me that it will be okay. She doesn’t tell me that those pair of shoes look better than the other ones or that my necklace is too bulky for that outfit.

Mom and I had such a strong bond. And I’m sure my dad felt as if we ganged up on him quite a bit, but that comes with the territory of being the only man in the house. Once a week mom and I would play tricks on him. We would stuff his dress shoes with toilet paper so when he woke up and tried to put his shoes on at 4:45 in the morning, he struggled. And when he got home from work, we’d laugh. That never did get old. It got him every time. Too easy.

A couple weeks ago, when mom was still with us Dad told me stories about him and mom. One of them being that mom stood him up A LOT during their dating days. Or, when mom got my dad a watch, and to be sentimental, engraved it with his name, except, after a year of dating she still didn’t know how to spell his name right. So she gave it to him, engraved with ALAN. Not right mom, not right.

Or, when dad tried to propose and they sat down for dinner and without saying anything mom said “Allen I know you have something for me. You have something in your pocket, I know it. Aren’t you going to ask me something?” Nothing could be a surprise with mom – and that is when I realized I really am my mother’s daughter. So, when Stephen proposed, I did the same thing. I begged and pleaded for him to give me the ring. I told him “I know you have it. Just do it. Ask me. Do it. Do It.” And, he did do it and we planned a wedding in 22 days, so that my mom’s dream of seeing me marry the man of my dreams come true, and so that our dream of having my mom there would be possible. That’s one week I remember more than any other week. The week that we sat on the couch and planned our wedding.

So, at the perfect timing, we received our wedding video yesterday. And last night, my husband and I sat down and watched the two hour film. I couldn’t wait to see my mom. I couldn’t wait to see her talk, laugh and cry. But, for some reason I find this totally crazy. Because seeing her would obvious make me upset, emotional and angry. And, I know our wedding film is supposed to be about us and be such an amazing thing to look back at. But, right now, for me it’s not. Right now for me it hits too close to home and as I cried my way through the video at every single shot of my mom; I was right back to the beginning of my grieving.

As I watched her in one scene of the video, I left the room, and it was the first time I heard what she said when I wasn’t there. She said, “Allen, she looks absolutely beautiful. So beautiful. I can’t even believe it.” And that hurt even more. I know one day I will look back at our wedding video and watch it with amazement and also watch it with a huge smile on my face, not just because it was the best day of my life, but because I can see my mom. I can watch her and hear her. I can be back in that moment with her.

Yesterday, we celebrated Easter, but also my Mom’s first birthday in heaven. When we laid mom to rest last week, our priest said, “God gives us all the time we need on Earth, to grant us eternal life. Whether it’s 6 years or 64 years, it’s enough time.” After I thought about it, he’s right; although difficult to say; he’s right.

Mom had just enough time. When we saw those who came to pay their respects, it was overwhelming, but that was mom – mom talked to everyone, she was nice to everyone and she truly impacted those who were in her life; she impacted them forever.

Although, mom may have had just enough time to be granted eternal life, or just enough time to make a difference in the lives of those who loved her, I can’t help but feel that I lost out. I can’t help but feel that there wasn’t enough time. I can’t help but feel that just a couple more days or weeks would have mattered.

When mom took her last breath, I was numb. My heart was racing and I couldn’t feel anything. It wasn’t real. Not yet at least. Then, I sat there alone with her for a couple minutes. I had trouble saying what I wanted to say, because there was just so much. But as I sat there and looked at her, she was back to being healthy. She was free from the cancer. And I was thankful for that; but I was angry that to be free from the cancer she had to leave us. And for the days that followed, I had more anger, than heartbreak. I was mad that she was gone. I was mad that I couldn’t call her (even though I almost tried). I was mad that God let this happen. And, I was mad that no one could save her.

Then, that anger turned to sadness. And each day I cry a little more than the day before. Each day, it’s a little harder and each day I miss my mom a little bit more.

But somehow, the day of my mom’s funeral – I was strong; just like her. And people around me said, your mom gave you her strength today. I didn’t believe them at first, at first I thought it was just because I find it too difficult to cry in front of people and I am too proud to show my tears; but as I read my mom’s eulogy I remained calm, strong and stable. And, I asked myself, how is that even possible? My answer was the answer a lot of people gave me – it was my mom.

Now, five days after burying my mom, life is hard without her. In the last five days I’ve grieved more, I’ve found it more difficult to be alone. I’ve found it more difficult to sit and do nothing. I have dreams about her every night and wake up crying. I cry during the day. I cry at night before I go to sleep. I cry when the thought of her pops in my mind. And, I cry because I haven’t had a sign from her, besides an owl the night she passed away. I cry because no one can understand what I am going through. I cry because people think they can. I cry just because.

And when people ask me how I am doing, I say fine, just like my mom always did. Because if I really said how I felt, it would be something like this – I feel like my world is crashing and sometimes I feel like I can’t breathe. I’m jealous of people who have their moms and I’m jealous of people who can call their moms. I’m angry at what people say to me. I’m angry that sometimes I’m forgotten about and people only ask me how my dad is doing. I’m angry that people forget that I am 24 years old and motherless. I’m sad that I can’t call my mom. I’m sad that my mom can’t be here. I’m sad that four days after laying her to rest, we had to celebrate our first holiday without her and also her first birthday in heaven.

So as I end this blog entry, I leave you with the poem that Father Domenic Valla read at my mom’s funeral, The Dash by Linda Ellis:

I read of a man who stood to speak
at the funeral of a friend.
He referred to the dates on the tombstone
from the beginning…to the end.

He noted that first came the date of birth
and spoke the following date with tears,
but he said what mattered most of all
was the dash between those years.

For that dash represents all the time
that they spent alive on earth.
And now only those who loved them
know what that little line is worth.

For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left
that can still be rearranged.

If we could just slow down enough
to consider what’s true and real
and always try to understand
​the way other people feel.

And be less quick to anger
and show appreciation more
and love the people in our lives
like we’ve never loved before.

If we treat each other with respect
and more often wear a smile,
remembering that this special dash
might only last a little while.

​So, when your eulogy is being read,
with your life’s actions to rehash…
would you be proud of the things they say
about how you spent YOUR dash?

Like this:

She fought until the end. She fought so hard. She held on and had trouble leaving us. She didn’t want to leave us. And, we didn’t want her to leave. She battled.

Surrounded by friends and family all day on Friday, she laid there taking her final breaths. She held on. She said her goodbyes to everyone. It was the worst part of it all. Watching her breaths slow down and then become more and more shallow throughout the day. She was comfortable. We talked to her. We all told her how much love she has. We told her it was going to be okay. She was going to be okay – she was going to be healthy again with her high heels on and her big hair did; with a glass of pino grigio. She wasn’t going to suffer anymore.

And then, as I laid on the couch next to her the clock hit 2 AM and her breathing changed even more. I could tell she was protecting me. She didn’t want me in the room. She is my mom, and that’s what mom’s do – they protect.

Jonathon held her hand and her nurse watched over her and I went up to bed. 25 minutes passed and her nurse told us it was time. We all came down stairs and surrounded by her family, mom took her final breath.

I can’t believe she is gone. It’s not real yet. It hasn’t hit me yet. She wasn’t supposed to go. There was supposed to be some kind of miracle. She was supposed to be here.

I never thought it would happen like this. I never thought I would have to talk my mom into letting go. I never thought I would have to hope for her to let go. That’s not supposed to happen. You’re not supposed to have to talk your mom into leaving you. You’re not supposed to be okay with thinking it would be better if she let go.

Because it’s not better. The only “better” thing is that she is free from suffering. Nothing else is better. It’s worse.

So at 4 AM, we put the house back together. And as we finished moving the last piece of furniture, we heard her. An owl was hooting; we’ve never heard one here at home; the dogs started to bark and run around the house; and the owl continued to hoot. And we laid in bed, and before we closed our eyes, mom told us it was okay, she was okay – the owl hooted.

Her arrangements have been made and the thought of the reality of it has never been more painful.

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The last time mom was awake was 7 PM last night. She can hear us and shakes her head when we ask her questions like “Are you in pain? Are you comfortable? Can you hear us? Do you know we love you?”

It’s real today. This is really happening. It’s not a bad dream. This is real. And, I’m not ready – and I keep repeating that in my mind. I’m not ready to let her go. I’m not ready to loose her.

She’s not talking. She’s not eating. She’s not drinking. She’s grunting. She shakes her head. She gets restless. She’s on morphine. She’s on Ativan. And she looks comfortable and relaxed.

She’s not even gone and I miss her so much. Today, I said I wanted it to be over. But that’s not true. I don’t want it to be over, because when it’s over she’s not here. Because when it’s over she’s not coming back. Because when it’s over, it’s over. And I don’t know what it feels like to not fight this disease with her. I don’t know what normal feels like. And it will never be normal.

She’s my mom. She’s my best friend. She’s my everything. I call her millions of times. I fight with her when she tells me I’m wrong. I laugh with her when she says something stupid.

The thing is though, we lost her a long time ago. But, it doesn’t feel like that today. It feels new. It feels like this all just happened. It feels real – and I’m not ready for real. We aren’t ready for real.

We planned her arrangements today. At 24 years old, how do you come to terms with picking out a burial site, a casket, a funeral? How do you do it and not feel like it’s wrong?

This is all wrong. This is not how our story was supposed to go. My heart is breaking and my world it’s crashing.

I’ve been stowik, just like my mom. I’ve taken control of all of her care, just like she would have done. And as I hear myself and see myself, I see I’m more like my mom than I ever thought or knew. I hold myself together until I break. And I break when it’s quiet and I think people can’t see me. I cry then. And I’m sure that’s when mom has cried, when no one was watching.

And now we have nurses who are here all the time. They’ve already become our family. We treat them just like our friends and family. Our house has been full of love and life these past couple of days. And as each day gets worse, our friends and family stay longer, take care of us more, spend more time with mom, and keep us sane.

Today is a week, a week since we brought her home. We made it seven days. And each day gets harder for her and us.

She told us she wrote a letter. She wrote a letter and she doesn’t understand why it’s taking so long to get answered. She hasn’t received anything back and she just doesn’t understand why. Why haven’t they answered her letter?

Mom is ready, and if she’s ready, we’ll be ready. But that doesn’t mean we want to be. That doesn’t mean that we all don’t have a little denial in us. That doesn’t mean that we don’t think about the moment it happens and how it’s going to make our knees buckle.

So, mom, I’m so proud of you. I’m so thankful that for all my life we’ve had such a close relationship. I’m so thankful that you became my best friend during my teenage years. I’m so grateful to have learned how to be the best mother from you. I’m so happy you are my mom. I’m so in love with the person you are. You will always be my best friend, my mom, my shadow, my angel and my rock. Just as you have been all my life. I love you more than words can say.

And, we’ll be okay. Dad and I will be okay. It will be different and for a while it will feel like it’s a dream and it’s not real. But you’ll never leave us. You’ll always be here. You’ll always tell me when I’m wrong, and you’ll always give me the strength I need when I am weak.

Like this:

It’s like leaving a newborn. That’s how people have tried to explain my anxiety of leaving my mom even for a couple minutes. They tell me it’s good for me to take a break.

I’m by her side every day, all day. I help her go to the bathroom, wash up, feed her when she wants to eat, hold her drink when she’s thirsty, put and take off blankets when she’s cold or warm. I manage her medication and set alarms to remind me when she’s due for the next dose. I coherse her into taking a pill she doesn’t want to take and I handle the attitude when she didn’t enjoy taking it.

I took a leave of absence from work and day in and day out, I spend my time with my mom. I’m tired. I’m tired all the time. My anxiety is at an all time high and I’ve been experiencing panic attacks daily. Sometimes I feel so exhausted that I wonder how I’m going to take care of her.

But we have support. We have help. And I can’t help but feel guilty for talking about myself and how I’m tired or exhausted; because it’s nothing even close to what she’s going through.

She can barely keep her eyes open. She’s been nausea lately and has been dry heaving – like her other symptoms weren’t enough; the cancer now wants to add another symptom to the mix. She’s restless and agitated. She’s clammy and cold. She’s swollen and seeping. She doesn’t eat and barely drinks. The cancer is consuming her even more than before. Her condition changes not daily; but hourly.

And, we’re still not ready for all of this.

They tell us to start thinking about what she wants, what we want after this is over. And I can’t help but feel that talking about that is wishing her away while she’s still here with us.

She still tells me she loves me. She still gets snappy with me. She still looks at me.

But, getting everything in order is part of the process. It’s supposed to help us. We’re supposed to make decisions while we are in a good frame of mind – whatever that means. I can’t remember the last time I was in “a good frame of mind.” I feel like a robot and I feel numb.

I rarely show emotion, but when I do, it pours out of me uncontrollably.

I want my mom here. I don’t want her to leave us, but some nights I ask God to just take the pain away. Take the cancer away from her. Make her healthy.

And people ask me, how do you handle this? Do you have hope that pulls you through? My answer, I’m not hopeful – I know the outcome and being hopeful is silly. There is no miracle and even if there was, who’s to say this won’t happen to us again. My faith is pretty much nonexistent; and that’s probably why my prayers aren’t answered. I don’t believe in hope, because hope should have brought us a miracle a long time ago. Hope should have allowed mom to be admitted to a trial. Hope should have never let this happen multiple times.

So, instead I deal with this the best I can. I try to take it day by day and not look too far ahead. It’s easier than it sounds, but this is our reality. This is what we are all living.

As I finish this blog post, my eyes go to her chest. I watch it move up and down. She’s still here, and for that I am thankful.

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We’re home. We’re trying to enjoy as many minutes as possible with her. She’s tired. She’s exhausted. She’s ready to stop suffering, but she’s not ready to leave her family and friends.

Making memories – laughs, tears and a lot of hand holding with family and friends. We celebrated her first night home, her first night in a long time – home. [Marianne, Alan, Jonathon, Whitney, Christi, Stephen, Dana, Sue, Me (Ashley), Allen and Dave.]

I said this was going to be the hardest thing we’ve ever had to go through, or do; but what I didn’t realize was how scary this would be. I didn’t realize that my eyes would constantly go to her chest, making sure it was moving up and down, and she was breathing. Or, when she labors her breath and her chest doesn’t move for a few seconds, my heart begins to pound outside of my chest. This is our reality.

Yesterday was a bad day. She didn’t eat or drink anything and it took more than a couple of people to move her. She was uncomfortable and she had difficulty breathing. There was not much we could do to make her comfortable. She was scared to close her eyes because she was scared it was the time. She said, “I’m ready. I want to let go.” And when I asked her when, when are you ready; she responded, “Tonight. I can’t do this anymore.”

She made it through the night and she’s still with us. Our friends, I mean family, were here all day and night. Some slept here and we watched her. Some came around midnight just to say hi and give her a kiss.

And, we watched her relax and go to sleep. But, she only slept on and off – scared to go into a deep sleep.

This morning, we woke up, and moved her into a chair. She drank and ate more than yesterday. She’s tired. And, it’s okay to go to sleep. Her breathing is a little better, she’s relaxed. We’re here, next to her, and this is where we will stay – all day, every day.

Father Dom, from our church, St. Thomas the Apostle, in Oxford, Conn. is coming today. He’s coming to help give her some peace, help give us all some comfort. And we will pray. We will pray that when she’s really ready, she will let go, and she’ll be comfortable – and it will be easy.

I am so proud of her. She has fought this battle for too many years. A lot of people would have given up a long time ago. She’s never cried, she’s never gotten mad, she’s never said enough is enough. This is why she is my hero, and why so many people admire her. Her strength and will to live is beyond anything any of us can understand.

So as I sit here next to her and write this blog, I can speak for her and say she is grateful and thankful for every well wish wished, every prayer said, every piece of love shared. During this time, the hardest time in our lives, we are humbled by the support we have from our friends and family.